Do You Have a Question About Question 2?

If you could ask one question of legal, ethical and medical experts about a person’s wish to control when they die, what would it be? 

Here’s your chance. Massachusetts will vote in November on Question 2: Prescribing Medication to End Life, and to help voters think through the issues involved, a free, public forum will be held on October 25 in the amphitheater at Harvard Medical School’s Tosteson Building. 

Moderators will ask questions of an expert panel, but questions will come from the public.  

There are three ways for you to submit questions: 1) Simply click on “comment” below this story; 2) submit it via Twitter to @medethicsandme; or, 3) send an email via the link down the right-hand column of this page.

Thanks for participating in this important dialogue.

Grace & Anthony

Two recent New York Times stories provided very different looks into the complexity of decision-making at the end of life.

One is the ongoing story of a deeply religious family’s anguish over a dying adult daughter’s fate. Grace Lee has asked to be removed from life support and allowed to die, but her parents believe that tantamount to suicide, and a sin. The woman remains competent to make her own decisions, and after asking that life support be discontinued, she changed her mind.

“Clearly she was badgered into this position by her parents,” says the attorney for Grace Lee. “But in that context, what an incredible gift to give them at the end of her life."

By contrast, former Times editor Bill Keller recounts the death in England of his father-in-law, Anthony Gilbey, a fate that was accepted with humor and grace by the family, including the dying man himself, who replies to his physician’s terminal prognosis, “So, no more whoop-de-doo.”

Clearly, in the latter case, there was agreement that aggressive measures to prolong the dying process were not in the patient’s best interest. For Grace Lee, best interest is more complicated. When she asked that treatment be discontinued, the interest would seem to have been hers alone. But amid her family’s anguish, and stated hope for a miracle, her own best interests changed.

For more on now the Grace Lee story is being reported, see here and here.

In his final days, Anthony Gilbey was able to state his wishes. And Grace Lee remains able to answer questions with nods or shakes of her head. Too often, the patient is beyond reach, and the decisions are between physician and family members, with no real sense of what the patient would want.

The Gilbey and Lee stories also share this: In the telling, the role of the nurse is trivial or non-existent.

“Anthony Gilbey’s doctors concluded that it was pointless to prolong a life that was very near the end, and that had been increasingly consumed by pain, immobility, incontinence, depression and creeping dementia,” Keller writes. “The patient and his family concurred. And so the hospital unplugged his insulin and antibiotics, disconnected his intravenous nourishment and hydration, leaving only a drip to keep pain and nausea at bay. The earlier bustle of oxygen masks and thermometers and blood-pressure sleeves and pulse-taking ceased. Nurses wheeled him away from the wheezing, beeping machinery of intensive care to a quiet room to await his move to the other side.’”

But was it “the hospital” doing all that unplugging, disconnecting and bustling, or was it a nurse?

In stories about Grace Lee’s legal proceedings in various media, a search for the word “nurse” comes up empty.

Maybe this is understandable -- these are stories about medical decisions, which are the domain of the physicians, patients and families -- and, when they can’t work it out, the courts.

But the nurse’s role in such care is not to be overlooked. What must that feel like, to watch a patient wince or worse while you repeatedly perform procedures you know hold little or no therapeutic value? Nurses aren’t making the decisions, but it is their job to deal with the consequences -- in particular, to be meticulous about bed sores and dressing and tube changes, because over the weeks or months of life support, only such meticulous care will keep the pneumonia and infections at bay, and for only so long. Grace Lee called her care “unbearable”; the humans providing that care are the nurses.

In an ongoing study of medical care deemed futile by Community Voices in Medical Ethics, which hosts this blog through its Community Ethics Committee, we have heard two stories told in retrospect by parents about aggressive, prolonged care for children when “giving up” felt inhuman. Years after the deaths of these children, the two parents still carry regrets of the “if I knew then what I know now” sort.

One has come to believe the child wanted aggressive treatment to end long before it did.

The other has this memory: When the child died, after months of aggressive life-saving attempts, the nurse quit. This dedicated nurse had stuck with the family throughout their ordeal, even while others refused to participate. But when the child died, the nurse, burned out, got out. There was no next patient for her.

And that’s why I’m thinking about Anthony Gilbey’s and Grace Lee’s nurses. 

NOTE: Keller’s story provided an excellent insight into England’s Liverpool Care Pathway. 

VIDEO: Public Forum on Question 2

The web page for The Division of Medical Ethics at Harvard Medical School, which hosted the forum "Prescribing Medication to End Life," now features a video link to the forum.

The forum was held to help Massachusetts voters consider the ballot measure that would have legalized the practice alternately known as Death With Dignity and Physician Assisted Suicide. 

Moderated by Christine Mitchell and Dr. Robert Truog of the Division of Medical Ethics, the panel featured Drs. Marcia Angell and Lachlan Forrow, Boston Medical Center attorney Ellen Weinstein, and Carol Powers, attorney and president of Community Voices in Medical Ethics. 

The ballot measure was narrowly defeated by voters on November 6.

How Will You Vote on Question 2?

Come Election Day, Question 2 offers Massachusetts voters just two possible answers: yes or no. But the questions are countless, and how you answer may depend on asking the right ones -- and the language you use to describe what is being proposed.

The state calls it Prescribing Medication to End Life. Opponents and proponents have other names for it, and it's easy to see why. "Do you believe in Death With Dignity?" is not the same question as "Do you believe in Physician-Assisted Suicide?" And whether you consider the law as proposed to voters to allow for a dignified death or a suicide perhaps is determinant of whether you support it or oppose it.

The nonprofit Community Voices in Medical Ethics is interested in helping Massachusetts voters to think this through, with three papers documenting its study of the issue, and with a forum on October 25 featuring an extraordinary panel with clear understanding of the positive and negative aspects of the ballot measure.

The forum, free and open to the public, will be held October 25, 4 to 6 pm, in the amphitheater at Harvard's  Tosteston Medical Education Center, 260 Longwood, It will be moderated by Christine Mitchell, RN, and Robert Truog, MD, both of the HMS Division of Medical Ethics. RSVP to DME@HMS.harvard.edu

 

The panel will feature Lachlan Forrow, MD, director of both the ethics and palliative care programs at Beth Israel Deaconess Medical Center, and chair of the Massachusetts Expert Panel on End of Life Care, whose extensive report to the governor has called in particular for integrated palliative care and support for the MOLST advance directives program; Marcia Angell, MD, former editor of the New England Journal of Medicine and one of the leaders and signers of the Death With Dignity Initiative that put Question 2 on the ballot; and Ellen Weinstein, assistant general counsel at Boston Medical Center.

The panel also will include Community Voices president Carol Powers, an attorney, founding co-chair of the Community Ethics Committee, and primary author of the White Paper and Executive Summary.

Community Voices, which is responsible for this blog and affiliated with the Community Ethics Committee, has yet another term for the practice that is being put to a vote: Choosing Medically Induced Death. Including "choice" was considered important, even vital, in coming to terms with this change in the traditional healing role of the physician.

For the record, Community Voices has included both proponents and opponents, before, during and after our study that took in assisted dying as practiced legally in Oregon and Washington; voluntary euthanasia as practiced in Switzerland; and the current legal/parliamentary engagement of voluntary euthanasia in Canada, especially British Columbia.

The central question is this: Should physicians in Massachusetts be given the legal authority to prescribe a lethal dose of medicine to a competent adult who is terminally ill, physically able to self-administer, and wishes to end his or her life? 

Our lengthy White Paper, abbreviated Executive Summary, and Conversation Guide are meant to help you answer this question wisely. And the October 25 forum, with its panel of experts, is not to be missed.